[Krystal25]

#1018294

So I’m new to this forum, but am looking for some guidance and support from fellow people who have graves disease.
I have recently started taking methimazole, but it doesn’t seem to be doing much good. I have only been on the medication for 5days but I haven’t noticed much difference. I am suffering from insomnia, severe anxiety, rapid heart rate, crying spells and emotional and physical anguish and severe depression.I feel as if I am going crazy to be quite honest. I have been feeling really badly for the past month and was diagnosed last week with graves. My TSh level is 0.02 and in Jan of this year it was 2.7. I don’t understand what happened in the past 8 months to make me suddently have Graves disease. I am wondering if most of these side affects associated with Graves do ever go away?? I feel like I do not want to live in the current state of anguish that I am in right now and I need to find a solution to help me with some of these symtoms associated with this disease. It is affecting my job, my social live and my overall well being. I have been reading about the RAI treatment and the thyroidectomy as well. I am concerned with both treatments as I have heard some really good and some really scary things involving both. Can anyone give me some insight on their personal experiences with graves. It would be nice to find some other people who are suffering from the same disorder that I am. I feel like noone I know can related to this. If anyone can help me I’d really appreciate it!

Thanks,
Krystal

[James]

#1063784

Hello Krystal and welcome,

Everything you are describing in your post concerning the symptoms you are experiencing with Graves’ is very typical. The emotional upheaval, how it can effect your relationships and work, are all things that many of us can relate to. Rest assured it does get better. 5 days into treatment with antithyroid medication (ATD’s), isn’t long enough for any newly diagnosed patient to notice any changes. Firstly the antithyroid medication (Methimazole) that you have been prescribed assists in decreasing thyroid hormone synthesis. Larger doses are commonly given at the beginning to quickly address the hyperactivity, but it does take time to bring the overall levels of hormone down to a reasonable level where you are feeling like yourself again. Results vary from patient to patient. I started at 30mg/day and was reduced progressively after about every 6 weeks. By 12 weeks I was feeling SO much better. Eventually I was taking 5mg of Methimazole/day (a maintenance dose). Blood testing under a Dr.’s care especially during the initial phases is important. Eventually you should be able to tap into the correct dosage to keep you from being too hyper or hypo.

As for the 3 treatment options you had mentioned. All of them are considered “medically acceptable”. There are pros and cons to each, but most people will go on to lead productive lives thereafter with any one of them. We have several Facilitators who have had RAI, and two (including myself) who are or have been on antithryoid medication. We have a few posters who commonly contribute that have also gone the surgical route and may want to share their experiences with you. Right now the most important thing is that you ARE being treated. Once your levels have normalized, you will be in a much better frame of mind to make informed decisions concerning your health going forward.

Wishing the absolute best!

James

[snelsen]

#1063785

Hi Krystal,
Welcome to the hyper club that none of us wanted to belong to!
I think you may want to read the very fine post by James every day for a while! It is very descriptive of "how it goes" when you first begin with your ATD’s (antithyroid drug, in your case, methiamazole) And it is reassuring.

If you want to read ahead on the treatment options now, go to the search option, and type in "surgery," RAI" etc. You will find that there are several recent long discussions about making a selection. The biggest thought for you to remember, always, that it is your choice. Most people who weigh everything, including their preference, feel content with their choice. You can read their "decision trees," and begin to get a feel for what you want. To summarize, our decisions are all over the map of the three choices. I chose surgery, because I did not want RAI, and did not want to count on the ADTs. The people who chose ADT’s probably would not have considered RAI and surgery. The people who chose RAI probably did not want to do surgery or ADT’s.
So, believe me, there is not single answer.

As James said, it is MUCH easier to think about ANYTHING after you are not so darn hyper. We definitely are not ourselves when we are hyper. It’s awful. So if it seems too much right now, just realize you will feel much, much better after the ATD drug begins to put a halt to the excess thyroid hormone racing around, which is making havok of your life. I DO understand!
Shirley

[Jules]

#1063786

Welcome to the club none of us want to belong to Krystal.

Before I go into it. You will feel better. This is a very slow And frustrating process.
I am fairly new to this (7/1/10) I have/had all of your symptoms. I was on the anti-thyroid meds you are on. While they did not work as fast as I wanted them to they do work. It takes a few weeks before you will actually start feeling better from the mmi. In the mean time there are pills your doctor can perscribe for you to mask the symptoms you are having. Beta blocker helps with the racing pulse. Anxity pills help with the jitters and the I want to jump out of my skin feeling. Sleeping pills etc… You need to discuss your symptoms with the dr and get some help.
The worst is not sleeping. I found out that with beta blockers and anxity pills I am able to sleep a good 7 hours.

I had an allergy to the mmi (long story) so I am only on the beta blockers and anxity pills until I can have either surgery or RAI.

One word of advise is
you know your body if something is bother you call the dr or make an appontment Go in and talk to the dr. Do not wait for you next check up. Dr’s really don’t know as much about graves disease as the do about hypo.
As soon as you get help with your symptoms of graves it is easier to think calmly about what you want to do to either manage it or fix it.

This is a gread board to get info from, have questions answered or to just vent with people who know exactly what you are going through.

Hang in there it will get better. Praying for you.
Jules

[lhc11]

#1063787

Hi Krystal,

Hang in there. I was diagnosed with Graves in late March of this year, and I remember feeling exactly the way you are now. Even after I knew what was wrong and that I was being treated, it felt like it would never get better; I felt crazy, and anxious, and couldn’t sleep, and everything you have listed. I promise you, IT DOES GET BETTER. But not quite in five days. In my case it was about 8 weeks before I started enjoying life again, and 10 weeks before I actually felt like myself; but you should start to feel at least some relief sooner than that (but every body is different). In the meantime, consult with your doctors about beta blockers and anti-anxiety medication (I am a big fan of short term Xanax as needed, as you will find if you type "Xanax" into the search box just above; everyone has his or her own take on that).

I am someone who chose to have surgery. It was a nightmare trying to make a decision while I was hyper and anxious, but the better I began to feel, the better I felt about my decision, for which I had very important reasons. And everyone, as has already been said, has to make his or her own choice, and every choice is valid. You can find my relatively recent posts about my odyssey by searching for "surgery," or just with my username, "lhc11." I have no regrets at all about the choice I made–but I think you will find that everyone who has made a choice is happy with that choice, which is just proof that there are multiple good ways of managing Graves’, which is a very excellent thing.

You *will* feel better. Here I am, only a little past 6 months since I was diagnosed, and I practically have to remind myself that I have Graves’ disease. That’s how little a factor it is in my life at the moment. It gets better!!! (And this board is a wonderful place for you to have found–I only wish I had found it as early in my experience as you have!). Again: take your ATD’s, read as much as you have time for on this board, post about your worries/feelings/symptoms/questions, and hang in there.

Best,
lhc11

[snelsen]

#1063788

Hi Krystal, great advice from everyone! I have one suggestion to go along with the other great advice and support.
On your first visit, ask for a medical release of information form, check that you want all test results, labs, and visits, sent to your home, either by mail/fax whatever works for you. This is a new world for you, and like any new class, notes are nice, and it is very wise to begin a medical file for your own reference.
Shirley

[Harpy]

#1063789

Hey Krystal
You’ve had some great advice, I’d just like to add a couple of things, are you taking Beta Blockers (Atenol, Propylanol etc.) as well as the Methimazole, they are usually prescribed at the start to get some of the symptoms under control until the Methimazole has had time to take effect and start to reduce your thyroid hormone production.
The cascade of symptoms is a real pain, because they feed off each other, all will subside over time, at this stage just try to be, knowing that all these things will pass, try to eat well and get good rest.

Anxiety
Your mention of the severe anxiety, triggered my response, I recently experienced some new knowledge of GD & anxiety.
Does your anxiety have any pattern?, although there is a certain amount of anxiety which can be attributed to GD, with the behaviour of anxiety it often takes off on it’s own. A friend of mine started the GD journey back in May and she also had the anxiety issues (severe morning anxiety, evenings good), although she got all the other symptoms under control the severe anxiety was persistant, she had tried a variety of medications and none helped. We eventually did some research on just anxiety and found in many cases it is just a conditional response, because it feels so bad we develop a fear of anxiety and it is fear which brings it on and this then becomes a self fulfilling prophecy. Once she had this knowledge and began the process of dealing with the fear of anxiety by challenging it, it virtually dissipated overnight, it has been a bit over a week now and she still gets the occassional bout but these last only a couple of minutes not the whole day, I have a bunch of techniques I have collated regarding anxiety management, too much for a single post though.

Just remember Krystal, you are not the first and you won’t be the last, as people have mentioned you are now a member of an exclusive club, albeit not by choice, all your symptoms will pass and you will feel better.

[Krystal25]

#1063790

Hello everyone! Thanks for the words of encouragement! I feel much better after reading your posts on how things with GD will get better. I was given Xanex today from my endocrinologist for the anxiety and insomnia and I am hoping that this will help me until the Methimazole starts to kick in. I do have a few other questions regarding my symptoms. Has anyone else ever felt like they were outside there body looking in at certain points while trying to get there levels regulated? I feel like this certain parts of the day and it causes me to panic. I feel like I am outside myself, such a weird feeling and hard to describe. I never had this prior to being diagnosed with GD. If anyone has had this symptom, did it seem to go away once the TSH levels were regulated and the medicine started to work. I am hoping this symptom to will pass. I feel so blessed to have so much support through this message board, it is truly amazing. I am so thankful to have this to come to when I am feeling down and out. I plan to keep you all updated on my progress and hope to be feeling much better in a few weeks, I am confident that hopefully I will be able to beat this and go into remission!!

[Jules]

#1063791

Yes I do understand your feeling of out of body so to speak. It is weird to explain and the dr thinks I a nuts because each time I explain it different. I have thought this thru and have figured it out somewhat. I think it is more like brain fog. It feels like I’m slipping out. Then I panic and jump back to my current task. Motion with deep consintration seems to make it more noticable. I find that have actually was holding my breath, making me breath faster when I jump back. I know it sounds crazy but that is what happens. My RN friend said it is a panic attack. Not sure if it is from hyper because I am not regulated since I am the 1% allergic to the anti thyroid pills.

Just the beta blockers and atavain for anxity are keeping me sain right now. I meet with the surgeon to see if I’m a canidate fir surgery since I am hyper without the pills.

Hang in there and the Xanax will work.

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